I have mild to moderate ME/CFS: I tested negative

I have mild ME/CFS: I tested negative

This Poll looks at XMRV PCR tests via the VIPdx lab which tests for active infection in the blood. We're only looking at VIPdx lab results because we don't know how the Cooperative Diagnostics Lab test compares.

One thing everyone's interested in is whether illness level will effect ones potential for testing positive; i.e. will severely ill patients be more likely to test positive than moderately ill patients? To get a grasp on that the poll will assess illness level relative to disability on four levels; severely ill, moderate to severe, mild to moderate and mild. Disability levels aren't perfect but they're a start.

These polls are completely private; neither I nor anyone else can determine how anyone voted.

We're going to use Dr. Bell's disability scale. It's a bit lengthy. I highlighted the functional parts of it. This scale is from 'The Doctor's Guide to Chronic Fatigue Syndrome', by David S Bell, pages 122-123. (We still have some time - suggestions are welcome)

Dr. Bell's CFS Disability Scale

Healthy

100 = No symptoms at rest. No symptoms with exercise; normal overall
activity level; able to work full-time without difficulty.

MILD

90 = No symptoms at rest; mild symptoms with activity; normal overall
activity level; able to work full-time without difficulty.

70 = Mild symptoms at rest; some daily activity limitation clearly noted.
Overall functioning close to 90% of expected except for activities
requiring exertion. Able to work full-time with difficulty.

60 = Mild to moderate symptoms at rest; daily activity limitation clearly
noted. Overall functioning 70%-90%. Unable to work full-time in
jobs requiring physical labor, but able to work full-time in light
activities if hours flexible.

MODERATE TO SEVERE

50 = Moderate symptoms at rest; moderate to severe symptoms with
exercise or activity; overall activity level reduced to 70% of
expected. Unable to perform strenuous duties, but able to perform
light duty or desk work 4-5 hours a day, but requires rest periods.

40 = Moderate symptoms at rest. Moderate to severe symptoms with
exercise or activity; overall activity level reduced to 50%-70% of
expected. Not confined to house. Unable to perform strenuous
duties; able to perform light duty or desk work 3-4 hours a day, but
requires rest periods.

30 = Moderate to severe symptoms at rest. Severe symptoms with any
exercise; overall activity level reduced to 50% of expected. Usually
confined to house. Unable to perform any strenuous tasks. Able to
perform desk work 2-3 hours a day, but requires rest periods.

SEVERE

20 = Moderate to severe symptoms at rest. Severe symptoms with any
exercise; overall activity level reduced to 30%-50% of expected.
Unable to leave house except rarely; confined to bed most of day;
unable to concentrate for more than 1 hour a day.

10 = Severe symptoms at rest; bedridden the majority of the time.
No travel outside of the house. Marked cognitive symptoms preventing
concentration.

will severely ill patients be more likely to test positive than moderately ill patients? ...
We're going to use Dr. Bell's disability scale.

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Hi Cort,

I think it is BRILLIANT to connect XMRV test results to Dr. Bell's disability scale! I've always thought his disability scale was a great measure of function.

I've made a hobby of collecting other questionnaires and I've never found one that is nearly as good. A lot of them claim they are interested in function, but then they sneakily insert a few questions on mood or depression or anxiety.

It doesn't matter that the Bell scale is long. It just takes a second to scan to your number.

Thank you so much for doing this, and for making it a sticky. I can hardly wait for people to start reporting their results along with their Bell disability number.

The only suggestion I have is in the poll maybe put all the positive ones first, then all the negative. It will avoid mistakes and also it will be easier to see the distribution of the positives versus the negatives.

If I ever get tested, I'm wondering how I would complete this poll. For 27 years I've had relapses and remissions. In relapses, which average about 4 months in length, I would be 2, while in remission, sometimes for 6 months or so, I would be 9. (Or do I mean the other way round - too ill to make the effort to get back to the poll details!)

And this of course raises the more general question of would I test positive in a remission.

If I ever get tested, I'm wondering how I would complete this poll. For 27 years I've had relapses and remissions. In relapses, which average about 4 months in length, I would be 2, while in remission, sometimes for 6 months or so, I would be 9. (Or do I mean the other way round - too ill to make the effort to get back to the poll details!)

And this of course raises the more general question of would I test positive in a remission.

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Just do your best to guess. No scale is exact. I am barely able to work full time in a sedentary office job. The lowest that this scale allows is "60," which it describes as overall function of 70-90%.

I crawl into into bed the second I get home and sleep away most weekends and vacations. There's not a chance that this is 70% functioning.

Just do you best and remember that no scale can provide an exact picture of your condition.

Thanks Levi. There are two ways you can make polls - one in which you can see how individual members voted and one in which everything is private. These are private polls, neither I nor anyone else can tell how anyone voted. Sorry to jump on your polls - but I was thinking about this for awhile and wanted to get the functional part in there.

Does anyone know how long it takes to get the results of the testing back from the lab? I'm just ordering the test now.

Can you order the kit and decide later? My next CFS doc visit is like 12/4 so I'd like to have the kit on hand but if he talks me out of running it i don't wan't to be ogligated. It looks like they include an airbill for fedex or something so that got me to wondering.
thanks
Ken

I live in the UK and called VIP Dx today. They are not accepting samples from overseas due to the time and temp changes. They also mentioned the possibility of it getting stuck in transit. I also asked about the negotiations with RedLabs Belgium...they said they are two separate companies and that there are no negoiations going on. This test was licensed to VIP through WPI so it is WPI's technology. VIP is not and cannot license it to another lab.

I saw my doctor today and she said she was out of the test kits, and that the lab couldn't send her anymore right now...she said she would call me when she had more. Is this what other peoples' doctors are doing? She seemed to think it was better for her to get them rather than for me to order a test kit myself.

Wildaisy, thanks. My wonderful, brilliant doctor communicates a bit elliptically, and I'm not always sure what she means. I hope the wait isn't going to be too long. I am of the contingent that really wants the result soon. If at least a million of us are sick, though, I imagine it could take a while.

When I spoke with her yesterday, I asked about the WPI study and Dr. de Freitas' work of 18 years ago -- specifically, that this is apparently a different retrovirus. My doctor's opinion is that there will be subsets and different strains, which I think others have already suggested.

I noticed that the poll is now showing that 2 of our members that have severe ME/CFS have tested positive for XMRV. As replication studies are only beginning and are months away from publication, our in-house reporting will show early indicators of the prevalence of XMRV in our U.S. cohort.

Thanks in advance to everyone who is willing to share their results here.

I saw my doctor today and she said she was out of the test kits, and that the lab couldn't send her anymore right now...she said she would call me when she had more. Is this what other peoples' doctors are doing? She seemed to think it was better for her to get them rather than for me to order a test kit myself.

Amy

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Hi Amy,

I saw you posted on another thread that you are a patient of Dr. Susan Levine. I am too and when I had my appointment with her on November 5th, I told her that I'd called VIPdx for an XMRV test kit and was on the waiting list. She was fine with that. I see her again in December and I'm hoping to have the test kit to bring with me.

We got one more; 7 negatives and 3 positives (I think) for ACTIVE infection - about 1/3rd positive vs 2/3rds from the study altho 10 does not a sample make. For LATENT infection the ratio is higher although still lower than the study - 5 positives and 4 negatives.